Celiac blood test... what could this seemingly borderline position mean?

[Suffering_sunny]

This is the result I got this morning... but I am confused... what does <0.3 mean? I am right on the line 🤷🏻‍♀️

[Researchfan]

Hi. Sorry to hear suffering. Read your other posts. It’s a tough one when you’re left trying to figure this out by yourself.

Many on gluten free guerillas as I’ve learned from in the last couple years have spent years trying to figure diet and health out (myself included).

It’s taken me over 10yrs or so to have coeliac all but ruled out by a NHS gastroenterologist via genetic test.

Yes, A sensitivity to grains and in deed any food protein can cause systemic reactions including neurological.

I did two gluten challenges (two separate occasions). Normal range coeliac blood tests twice (3.2 then 3.5; normal 0-9). I was advised strict gluten free diet by the dietitian and gastroenterologist, as was so ill eating ‘normally’ . I was told before this that I had the choice to keep on eating gluten and eventually get the biopsy to confirm, or go back to gluten free diet and have the genetic test to all but rule out. So I opted for that. Negative test again. Less than 1% chance of Coeliac disease.. There are other gastrointestinal diseases with similar symptoms (gut and or neurological).

I think it all comes down to how much nutrition we can absorb. The symptoms reflect that. I’m not a Dr but have a scientific background, and have read extensively the research literature relating to food hypersensitivity, wheat and gluten related disorders.

Sorry for the long reply!

Re your test result. Usually procedure (NHS NICE guildines), the igA antiTTG test is the first screening test along with a Total igA measure. This step is important in case igA deficient, as this can cause false negative. If the igA Total antibodies are normal range then the TTG test of 0.3 would be accurate. If the Total igA is low and the TTG 0.3, this would prompt the Lab to retest for igG TTG or igG anti deaminated antibodies. It’s rare for igA deficiency but more common among Coeliacs, hence they check for this.

Assuming your total igA is normal. The test does not suggest coeliac disease. But it doesn’t completely rule it out. Only the gut biopsy, or genetic susceptibility test can. If there are ongoing clinical symptoms, further testing needs to be done.

I urge you to return to your Doctor or specialist if you can to be on the safe side, given your suffering.

If everything has been ruled out, it takes time for healing and especially B12 as well as other nutrition or lack of absorption will play a massive part in how you feel. I have been folate and iron deficient and can attest to that. Once your body can replenish healing can take place.

But do push if you can for clear diagnosis. If after everything else has been ruled out, figuring out the diet and lifestyle that works for you takes time as does healing but keep going with it and hopefully you’ll get relief soon.

If you feel better on a gluten free diet stick with it. If there’s no difference or only partial benefit there are many other foods can be sensitive to as well as the rabbit hole of cross reactions with gluten.

As an example 50% of Coeliacs react to casein (milk) like gluten, and only recover healing the gut once milk protein is eliminated from the diet.

For information, a sensitivity to milk protein and or lactose, and or Wheat, is also a standalone culprit in gastrointestinal disorders. Especially IBS and rarer eosinophilic gastrointestinal disorders (look up EGIDs as your other symptoms relating to swallowing and PPIs may be suggestive but please refer to a specialist for this). Out if interest did your previous endoscopic investigations check for this as it takes a knowledgeable gastroenterologist and biopsies of the oesophagus etc.?? In these cases treatment is available and strict elimination diet of individual food allergies can cure. Milk and wheat biggest culprits a long with eggs. But allergies are unique and non-igE delayed type usually. Reactions can take from a day to four days to appear why in that time it is so difficult to pinpoint a food that was eaten a few days ago causing a problem or indeed food eaten regularly causing a chronic disease.

Another example re gluten reactions, 30% of Coeliacs also react to Corn (yes the staple gluten free grain) as if gluten.

10% react to Oats (even certified gluten free from cross contamination) - this can be gluten cross reaction, the body reacts as if gluten; or can be a standalone oat sensitivity completely separate and nothing to do with coeliac disease. Similar to grain/cereals sensitivity that has nothing to do with gluten but involves another part of the immune system like allergy (igE or delayed non-igE mediated).

The gold standard to get to the bottom of any diet related reactions (autoimmune, immune, or intolerance) is still the elimination and reintroduction diet protocol. It’s time consuming but well worth it. But guidance and advice from a dietitian is usually necessary in order to ensure complete nutrition throughout.

Hope my reply is helpful!

🤗

[Suffering_sunny in reply to Researchfan]

Thank you for this!

I will go back to my GP about my digestive system issues.

Gosh, I cannot believe that you just said that - I literally had corn last night and my stomach went wild... again... ?! I was having to sit up in bed, guts gargling and felt like I was breathing fire, the lump in my throat and tension felt horrible.

I have decided to eliminate it too, so I am shocked that you have said that this is a thing! I had no idea!